11 Home and Healing

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11 Home and Healing

INSTALMENT 11 OF MY JOURNEY WITH CLUSTERFLUFF THE BRAIN TUMOUR

I’m planning on returning to work next week (from home). And yes, yes, I will pace myself and take naps whenever I need to. Purrrrr. Endone is still my friend.

I lost my brave

Thursday, I lost my brave after leaving the HDU (neuro ICU ward – where our obs were taken every 15 mins, then every 30 mins, then every hour and where I learnt to recite the answers to 4 questions – who, what, where, when) I stupidly thought the new ward would be quieter, and I’d get more sleep, only being woken every 2 hours.

But then came the bonging noises, continuously reverberating throughout the night (the endless nurse-call alarms – obviously morphine had been a panacea to them). Seriously, if I had to name a more effective torture, I couldn’t – except maybe Easy Street from The Walking Dead. I cursed myself for not reminding Chris to bring my earplugs.

The new, emotional me, kicked in Friday morning, when Jess, a nurse, woke me around 7 am for obs. ‘Oh geez,’ she said. ‘I just had one of those heart-stopping moments. You were so quiet and still, I thought you’d had another seizure and weren’t breathing.’

I was so glad Jess said that, because it gave me permission to cry, mainly from exhaustion – an older gent opposite, who had a nose-feeding tube fitted, meaning he hawked up phlegm continually, had watched telly late into the night … that and the freakin’ bonging noises had made my nerves raw.

Oh, and people, when I tell you, your parents/grandparents who have just had a stroke DO NOT need a visit from your noisy, unruly, tired little princes and princesses, believe me. NONE of us do. Use your freakin’ brains – because ours are in trouble and we can’t fight for ourselves. You’re in a critical care ward FFS!

Up until that moment, I’d not let go of my brave. God, what a relief and release!

I sooked good and strong.

Jess gave me a kindly lecture about asking for help. I said I was fine – I mean, I’d only been in hospital for 4 days, while another woman, opposite, had been here for 3 weeks. Jess gave me a you’re-doing-that-martyr-thing-again look, so I asked for some tissues – it’s the little things that make a difference.

She went about her rounds and I wrote a blog on my phone then accidentally erased it. Sigh. More tears. I guess I’d said what I needed to say to myself.

I got out of bed. In the fluorescent light of the bathroom, I didn’t recognise the bloated, bruised face in the mirror – temporary, I reminded myself. I had another little sook. Because I was allowed to now.

The emotions are partially the anti-seizure drugs. I’m squidgy and spongy, like the side of my head that’s yet to heal. Want to feel it? You know you do. And there are weird sloshing noises in my brain, when I move – fluid yet to drain. All normal.

Change of holiday plans

Our January holiday is going to need rethinking – I can’t fly for quite a while, due to air pressure issues. We’re tossing up the idea of a long train journey instead.

Now

Chewing hurts. Who knew jaw muscles were so integrated with the scalp?

I can’t drive for the next 3 months.

I’m still finding little bits of sticky tape on my body.

Loss of function

I’m having a bit of trouble typing and gripping – I’ve got constant aching tingles in my left hand, but our brains are amazing things, and in time, the synapses will repair and I will relearn to use my hand effectively – it’s that fine motor skill stuff.

Staples be gone

This Friday, I’ll be having the staples removed from my skull. Woot! Hair-wash day. I’m so grunge right now.

Chris will stay home with me most of this week, and my good friend Kathryn will babysit me the other couple of days.

Thank you again to all my friends and family who have been an amazing support. Every little message you sent, checking in on me, meant so much. All the support you gave Chris. Every sugar-fuelled hospital visit meant the world to me – sanity among strangers.

Something beautiful to finish off

Saturday was Chris and my 17th wedding anniversary. We have a tradition of going to our favourite restaurant for the best chocolate soufflé in Melbourne. Instead, he bought me flowers, recorded a song and cooked me giant, choc-fudge cupcakes, which he was about to bring up to the hospital to share with me, when we got the news I was being released. We devoured them at home, warm with vanilla bean ice cream. (In case you didn’t get the song it’s from The Wizard of Oz – The Scarecrow’s song – we’re a bit twisted like that.

Geraldine

My approach to beta reading: To ask—does the book achieve what it has set out to do? Does it speak to its target reader? Are there any loopholes/developmental issues that will cause the reader to not suspend their disbelief? Are the characters rich and layered—and real? Does the prose flow, does it show and not tell?Formal Qualifications: BA (Hons) English Literature with minor in Creative Writing; MA Publishing and Communications.Favourite Genres: YA, literary fiction, crime fiction, true crime, academic non-fiction (literature, history, art).Genres I’m also happy to read: N/A.Genres/material I won’t read: Military history.Favorite authors: Jane Austen, Neil Gaiman, Alice Munro, Haruki Murakami, Milan Kundera.Am I an author? Yes.Hobbies: Painting, Writing (poetry, short stories, plays), Soccer, Music, Yoga, Hiking.

Jacalyn

My approach to beta reading: Most of my working life has been training or assisting writers with their work. So I believe it’s so important to give feedback and guidance that encourages growth, not causes them to doubt their abilities. I don’t so much focus on rules; I focus on how writing makes me feel.

Anne-Marie

My approach to beta reading:

I’ve worked with many first-time authors, so I know that trusting a stranger to read your work can be daunting. But the aim of beta reading is to nudge your book a little bit closer to publishable, and hopefully that is what I will do. I will highlight what works with your book, as well as what doesn’t work.

Favorite authors: I tend to read by genre rather than author, but some I’ve enjoyed are Nimue Brown, Emma Restall-Orr, Bill Bryson, Brene Brown.

Am I an author?: As a former journalist I’ve had my work published many times.

Hobbies: Reading, swimming, cooking, gardening, Scrabble, pub quiz.

Fiona

My approach to beta reading: I go with my first instinctive response. I think about what’s working and keeping me there, and what can be improved. Then I think about the most useful way to convey this to the author.

Are you an author? Yes. I’ve co-written three books for babies, and I write about books for literary journals.

Hobbies: Patchwork and crane-watching

Melanie

I value transparency and will offer my thoughts honestly but with optimism. Character development, authenticity of voice and motivations behind character action interest me, and I’m always looking for solid storylines and fresh perspectives and style. Genre matters little when a story is told well by engaging characters.

Robyn

My approach to beta reading: Growing up, I was known as the girl who was always reading. I recall walking to the local library on my own at five years of age. I love a good story, be it true or fiction, especially when it resonates in some way. But more than that, I love coaching/guiding an author to make their story something special.

Hobbies: Writing children’s stories, learning Spanish, travelling, enjoying time with family and friends.

Merridy

My approach to beta reading: English literature studies gave me an excellent grounding in book structure, language use, tone and genre. A lifetime of incessant reading means I quickly gain a feel for a work, its characters, plot pacing and integrity. It’s a pleasure to use these skills to help other writers develop their books.

Mary

My approach to beta reading: Each author is different – each manuscript, therefore, can’t be compared with another. However, the character development, the ‘page-turning’ effect of the narrative, the prose, dialogue and descriptions should all, in turn, keep the reader satisfied and this is what I’ll be looking for. I enjoy reading new authors and particularly debut authors; currently, I’ve read three this month.

Am I an author? Yes. Non-fiction and academic writing, currently compiling.

Hobbies: reading, knitting, gardening, walking, glamping, birdwatching, history and writing an oral history project for Bridgetown’s 150th anniversary of its gazettal.

Margie

My approach to beta reading: As a writer I know feedback is invaluable. It should, though, be couched in a supportive, constructive manner. Writers’ egos are usually fragile and writing is a very personal business; we bare our souls. I’ve learnt a great deal from having others read and comment on my own work.

Lainie

My approach to beta reading: I always keep a notebook beside me, day and night, so I can jot notes on queries or thoughts that come to me as I read. I’m passionate about books and stories and I’ve never failed to finish reading a book I’ve begun!

Kelsey

My approach to beta reading: I like to give honest but sensitive feedback on how events and characters made me react, focusing strongly on believability and offering suggestions that may have come to mind during reading.

Kat

My approach to beta reading: My job as a beta reader is to give authors an overview of what is working in their manuscript and what is not. I am friendly, honest and constructive in my responses, helping authors to look at their manuscript in depth and improve it.

Formal Qualifications or Training: Diploma of Professional Writing and Editing, Bachelor of Professional Writing and Editing.

Imelda

My approach to beta reading: I aim to give the author genuine feedback, including any emotive response, in a nurturing, supportive fashion. I like to note areas of brilliance as well as the disparities and areas for improvement. These can be in relation to plot, character, setting, pace, point of view and authenticity of voice.

Alix

My approach to beta reading: I’m honest and communicate the manuscript’s positives as well as its drawbacks. I try to articulate how I felt as I read the manuscript, how I wish I’d felt and whether the two align.

Beth

My approach to beta reading: Because there’s vulnerability in letting others comment on your work, I look for things to praise as well as to query. I consider the pace of the story and its context. I also ask whether a particular action feels authentic for a character — would they really act as described?

Formal Qualifications: (Hons) in Political Studies, Diploma of Professional Writing and Editing (in progress at RMIT), short courses by Editors Victoria including structural editing. Member of the Institute of Professional Editors and the Australasian Medical Writers Association.

Are you an author? Yes. I write reports, grant applications and web content. Most of this is in the health field. I particularly enjoy translating complex medical information into plain English. Why refer to ‘unanticipated mortality events’ when you mean ‘sudden deaths’?

Hobbies: Reading, swimming, kayaking, bushwalking

Evelyn – 20

My approach to beta reading: I like to fully immerse myself in the narrative and try to constructively identify details that hinder that experience, in the most encouraging way I can.

Formal Qualifications: Currently a university student. Year 12 Certificate.

Chloe – 14

My approach to beta reading: My approach is to be open to what the author is trying to create with their writing and to assist them in finding the best version of their work they can. I believe that listening to feedback is a crucial stage in producing something with potential.

Formal Qualifications: Year 6 English Award, distinctions in English (Years 7 and 8)

Millie – 18

My approach to beta reading: I believe beta readers should be honest and give true opinions of the book, though they should also be mindful of the fact that they may not be the intended readership and that there are multiple ways to interact with the text.

Ari – 19

My approach to beta reading: I give authors honest feedback. I like to help authors who are planning to publish by giving my opinions on what worked for me and what didn’t, in their work. I enjoy such a broad spectrum of fiction and have read many styles of writing. I can always find feedback to give.

Carly

My approach to beta reading: I feel it’s important to leave any personal agenda at the door and figure out what the author’s own vision is. I use a combination of general impressions, assessments of the strengths and weaknesses and suggestions for improvement to form an honest evaluation of the story.

Kellie

My approach to beta reading: It’s not about my preferences, but about how the book will play with target readers. A writer myself, I try to give feedback that covers aspects of writing craft, which can affect the reader’s experience, while remaining constructive, encouraging and kind.

Formal Qualifications: I am in my final year of studies for a Certificate IV in Professional Writing and Editing at Victoria Polytechnic. My Diploma in PWE is also underway.

Favourite genres:

Romance: contemporary and new adult, comedy, drama, rural and small-town.

Are you an author? Yes, I’m a writer and online-published fan fiction author. I’m yet to publish original fiction.

Hobbies: writing, sewing, reading.

Connie

My approach to beta reading: I love to offer insights and productive feedback to authors. I’m not a critical person by nature and will always see the best in someone’s work whilst making honest suggestions for improvement. I know the struggle authors face and the considerable contribution constructive feedback can make.

Formal Qualifications: Diploma of Professional Writing and Editing (RMIT), Bachelor of Social Work (Monash University).

Jo

My approach to beta reading: I love snuggling down to enjoy the luxury of being a reader. I note anything that strikes me – what’s absolute gold and compels me to keep reading or what jars me from the story. I then put the manuscript aside to allow the narrative settle in my bones before writing my report with deep respect for all that the author has achieved. I’m passionate about story in all its forms and love to support fellow writers as they create their unique brand of narrative.